How one SICK employee is helping an organization raise awareness of a common and preventable virus for babies with CMV

Have you ever heard of Cytomegalovirus (CMV)? If you haven’t, you’re not alone. One in three pregnant women who contract CMV will pass it to their baby, but studies have shown that only 9 percent of women know about this illness. Every year, 400 infants die from CMV and over 4,000 children have a permanent disability due to the virus. But the overall awareness of the illness is still very low. So the question remains, how can we help babies with CMV?

The National CMV Foundation works to raise awareness about this virus and prevent the most infectious cause of birth defects in the United States. This organization was started in 2015 by several co-founders, all with children who have been significantly impacted or have died from CMV.

In the United States, nearly one in three babies are born with CMV and are already infected by age five. People with weakened immune systems who get CMV can experience some complications, but for the most part, the virus only becomes a problem if a fetus is infected with the virus, referred to as congenital CMV. Many babies born with CMV have brain, liver, spleen, lung, and other growth problems. The most common long-term health problem is hearing loss. The issue arises with detecting the infection – most people with CMV have no idea they have even been infected.

SICK and the CMV Foundation

In 2021, SICK became involved with the National CMV Foundation, mostly lead by the efforts of Stephanie Stanton, HR Manager for Talent Acquisition. Her passion for raising awareness around this virus started when her son was diagnosed with it in 2019 to help others with babies born with CMV.

“After my son was born, I was asked if I wanted to be a part of a CMV study through the hospital. I had never heard of CMV, but did the test and found out he had congenital CMV,“ Stephanie said. “My son is asymptomatic right now, but it could change throughout his life. We’ve been going to the University of Minnesota to have his hearing and vision checked and to get developmental testing. The number one side effect of CMV is hearing loss.”

After her son’s diagnosis, Stephanie connected with the Amanda Devereaux, Program Director for the National CMV Foundation, about volunteering opportunities to help raise awareness of how to prevent the spread of this virus and what to do if your child is diagnosed with it.

Stephanie had never heard of this virus when she was pregnant with her son. Her obstetrician never informed her of the risks, even though she is considered higher risk due to her having other children. The virus is primarily spread from pregnant women to their baby in utero. Women with toddlers or other young children are at a higher risk because the disease is primarily spread through bodily fluid. Meaning if you share food with your toddler or kiss your toddler on the mouth, you could be spreading the virus unknowingly.

Amanda also got involved with the organization shortly after her daughter was born in 2015. Her daughter was severely impacted by CMV, so Amanda started attending conferences and volunteering with the organization.

“My daughter looked perfectly healthy when she was born and she passed all her screenings,” Amanda said. “You would never know that she had CMV by looking at her, but she is severely impacted by it.”

Screening for CMV

After an infant is born, there are several screenings conducted to ensure the infant is healthy. None of those screenings include testing for CMV, which is critical as 90% of babies born with CMV are asymptomatic at birth, maybe not even showing signs or symptoms for several years. Early intervention is key, and this is something Amanda is looking to change.

“The National CMV Foundation is pushing for mandatory screenings for all newborns for CMV in the United States,” Amanda said. “In some states, if a newborn fails their hearing screen, they get tested for CMV, but we need to take it one step further. There is no national standard for all infants to get a CMV test after they fail their hearing screening. There should be universal screening for all newborns because early intervention is key.”

Universal screenings are moving forward in the Minnesota State Senate with the Vivian Act, which passed in 2021. It makes Minnesota the first state to universally screen all newborns for CMV. The “Vivian Act” is named after Leah Henrikson’s daughter, Vivian, who was born with hearing loss and then diagnosed with Cerebral Palsy, which traced back to CMV. The quick medical intervention Vivian received is something lawmakers want all families to have access to.

“The passing of this bill in Minnesota is great,” Amanda said. “In addition to universal screening, a significant amount of education is also needed. Medical professionals need to be better educated about this virus and take this seriously. Many providers do not realize how common it truly is.”

Support for CMV Foundation

For the past three years, the organization has hosted the Strides 4 CMV Twin Cities 5K Run/Walk/Roll at the University of Minnesota. SICK was a sponsor of the event in 2021 and the organization raised over $15,000.

In addition, the National CMV Foundation was a recipient of SICK’s quarterly donation lottery in 2021. This initiative allows SICK employees to nominate an organization of choice to receive a donation from the company. Stephanie nominated this foundation to help raise awareness about this preventable illness.

“I’m happy that SICK finds ways to support great organizations like the National CMV Foundation,” Stephanie said.

Preventing CMV

So, what’s one thing Amanda and Stephanie would like new parents to know about CMV? They not only want to raise awareness of the virus, but they also want parents to know how to prevent it.

“Just be more mindful. We’re not asking parents to be germaphobes and be scared, but think about things that can reduce your risks,” Amanda said. “Wash your hands regularly, don’t share food or drinks with your toddler, don’t kiss your kids on the mouth, just to name a few.”

When Stephanie’s son was diagnosed in 2019, she received a lot of support from SICK and her HR team, and this is something that she wants to emphasize to all employers and families going through this.

“There are numerous appointments, and it can be hard for parents since you don’t know what the future holds,” Stephanie said. “My son could lose his hearing and we just don’t know. It’s great when a company can provide empathy and support for their employees dealing with things like this.”

If you’d like to donate or support the National CMV Foundation and help babies with CMV, you can find more information at their website.